Wednesday, September 7, 2011

I received a reply to the letter to Senator Hatch I sent in July. Actually, it came a while ago and I just hadn't gotten to posting it here. Note that the HELP Committee meeting was postponed twice, so the meeting date isn't the same. The footnotes give my commentary on his response.

August 11, 2011

Mr. Robert Walker
[ADDRESS REDACTED]

Dear Mr. Walker:

Thank you for writing to express your support for legislation related to autism spectrum disorder (ASD).1 I appreciate hearing from you and value your input as a father of children with ASD.

As you know, recent scientific revelations that the prevalence of autism could be as low as one in 150 individuals2, and that there may be a genetic link to autism, point out the need for continuing research.

Senator Robert Menendez introduced the Combating Autism Reauthorization Act (S. 1089) on May 26, 2011, and it has been referred to the Senate Health, Education, Labor and Pensions (HELP) Committee. The original Combating Autism Act (P.L. 109-416), which was signed into law in December 2006, was passed to provide better integration of the health, education, and disability programs already available.3 S. 1089 would reauthorize CAA for another five years.

As you know, the HELP Committee is now expected to consider this legislation in September.4 As a member of the HELP Committee, and an original cosponsor of the 2006 autism law, I will bear in mind your insightful comments when CAA reauthorization legislation is considered by the Committee.5

Again, thank you for writing.

Your Senator,
[SIGNATURE]
Orrin G. Hatch
United States Senator

OHG:kll

1 It really ought to say “autism spectrum disorders” (plural) here. He speaks about it as if it were a single disorder, despite the word “spectrum” in the name. Not a major point, but it is an indication that Sen. Hatch may not be very knowledgeable about autism spectrum disorders.

2 The numbers vary depending on who you talk to. It's difficult to get good numbers on autism prevalence because a lot of people go undiagnosed for years, different countries have different diagnostic criteria, and the diagnostic criteria have changed over time. The CDC reports that autism prevalence in children is estimated to be somewhere between 1 in 80 and 1 in 240. (The average, 1 in 110, is typically the number cited.) Prevalence is lower (meaning a smaller percentage of people affected) when you include adults because some adults are undiagnosed and because therapy helps some people with autism to eventually overcome the symptoms and no longer manifest as having an ASD (though technically they still do). Prevalence appears to be increasing dramatically, but it is undetermined whether that is due solely to increased awareness and broader diagnostic criteria or there is an actual increase in incidence of ASDs.

3 I feel this is something of an understatement. The Congressional Budget Office estimated in 2006 that the original bill would result in a $300 million increase in autism spending, which included significant increases in amounts for biomedical research grants.

4 Specifically, after being delayed twice, they were slated to meet on it today.

5 The Senator avoids stating his intentions with regards to the bill. This is not surprising, as between the time he wrote it and today he might find new information that may change his position on the bill. Having sponsored the original bill, one might expect that he would support extending it, and the language indicates a positive inclination towards it. However, while he was a co-sponsor on the original bill, he is not co-sponsoring this one, which says to me that he is at least less favorable towards it than he was previously. I'll definitely be keeping an eye on this bill.

Thursday, July 28, 2011

On Wednesday, August 3 at 10:00 am in room 430 of the Dirksen Senate Office Building, the Health, Education, Labor and Pensions (HELP) Committee will be meeting to discuss SB 1094, the Combating Autism Reauthorization Act of 2011 (CARA). This bill proposes to extend the original sunset date (September 30, 2011) of the Combating Autism Act of 2006 (CAA) for another three years. As you are a member of the HELP Committee, I am writing to ask you to attend this meeting and to vote in favor of SB 1094.

There is still a lot we don't know about autism, and continued research is desperately needed to better understand Autism Spectrum Disorders (ASDs) and discover ways to help those who are afflicted with them. Our own University of Utah has made significant strides in autism research. This research would be severely curtailed without the funding that SB 1094 would authorize.

I understand that there is currently a major focus on federal spending, and that there are many who would be inclined to vote no on this bill, feeling that it cannot be afforded. I am of the opinion that while we do need to cut back on many programs, we cannot afford NOT to fund this research. Only a small percentage of autistic individuals eventually become able to hold jobs; most are financially dependent on family members or the state for their entire lives. Since many states (including Utah) do not require insurance companies to cover autism therapy, many families go into severe debt to pay for therapy for their child(ren). Frequently, these families end up in bankruptcy and living on welfare as a direct result of these expenses. Add to that the lost productivity from these individuals and their loved ones who must care for them, and the expense to our nation due to autism is immense.

Research can help us find more effective and less expensive therapies. Beyond the great personal good this research can do, from a purely financial standpoint every individual who is recovered and becomes self-sufficient will be an asset to the state instead of a burden. (Additionally, if Utah were to require insurance companies to cover autism therapies, families would be able to afford therapies for their children and fewer would end up on welfare.)

My 5-year-old daughter, [NAME REDACTED], has autism, and my 3-year-old son, [NAME REDACTED], has Pervasive Developmental Disorder (PDD-NOS), which is also considered an ASD. I would do anything I could to help them to live full, productive lives. This research would be valuable to them and to people with ASDs across our nation. I respectfully ask that you please attend next Wednesday's meeting and vote yes on SB 1094.

We have a user story state called "Backlog", which we're omitting in this query using the first item in the where. (Personally, I think backlogging should be done simply by taking it out of the iteration, but that's my opinion.) We also check to make sure we're not showing items from inactive projects (p.IsActive = 1), that we're only showing user stories and bugs (g.EntityTypeID = 4 or g.EntityTypeID = 8) and that the iteration it belongs to is active or the item is still open even if the iteration has finished (getdate() between i_g.StartDate and dateadd(d, 7, g.EndDate) or es.Final = 0). Note that when an iteration finishes, the items from it continue to appear for a week afterward.

This should be enough to convince reasonable individuals that I did indeed write this myself, not that writing it myself was even a criterion for consideration in the contest in the first place.